Things have been moving along here as we get geared up for Christmas. This week has been full of Christmas baking, kids concerts and planning our holiday get togethers. I really feel like we need a nice, peaceful holiday and not a holiday where we are running so much that we don't have time to look around at what is truly most important to our family. I am looking forward to a Christmas with less fuss this year. Jeff, once again, finished up our shopping early so we just need to do a few last minute things which is so nice. Very happy to have a husband who doesn't mind shopping and is happy to jump in and make sure the boys are happy at Christmas. When I look back at the last few Christmas's, we have really had to simplify things. I havn't been up to doing my usual all day shop-a-thons and baking sessions. It's actually made Christmas a lot nicer and more relaxed so maybe this is a tradition that we will keep up in the many years to come.
I am recovering very well from surgery. It's hard to believe that it's been 6 weeks already. I went and saw my oncologist on Wednesday and everything is just as we expected. We spoke alot about different treatment options but none of these are available for me at the present time. Although, it's nice not to have to go for chemotherapy or radiation it is also disappointing that this is because there is no such treatment available for people with this type of cancer. (stage IV metastatic melanoma) It's not that I don't need any further treatment but that there is nothing available. So we wait. The chances I will have another recurrence is very likely and if this does happen then hopefully once again it will be operable. Every day that I remain "No Evidence of Disease" I look as another day for treatment in this area to advance and for someone to finally find a cure.
It is very difficult some days to remain optimistic and hopeful especially after another recurrence. This last return has been extremely difficult for all of us. It has reaffirmed that this isn't going away and has become almost a chronic illness. I have recently had many times of feeling scared, angry and upset that we all have to deal with this. I sometimes find it very difficult to even go to the doctor. This past week I would have rather scrubbed toilets than go back to Cancer Care. I almost had a panic attack the night before dreading this trip in. This may not only have been because I sometimes just get so tired of going to the doctors but also because this was my first time going back to see my doctor since we lost Earl. Earl and I both had the same Oncologist looking after us and it brought up alot of sadness for me going to see him again. I miss him so much. Jeff came with me and this comforted me and I was able to get through it just fine. I left there having all of my questions answered and also like we had some sort of plan for my future treatment. Although, I don't like to plan too far away I also need to know that there is some sort of plan there.
I feel very grateful that I am still able to be out and about living life in an almost "normal" way. I'm able to get out of bed every morning, do every day activities and still get alot of joy out of life. A trip to Cancer Care can sometimes make me realize how fortunate I really am and that I had better not take that for granted. So, since I still have a couple of weeks before I go back to work I am really going to enjoy the season and spend lots of time with my family really feeling blessed for what we have together.
I wish all of you a very Merry Christmas full of love and joy and a healthy and happy 2012!
Saturday, December 17, 2011
Thursday, December 1, 2011
Latest news...
I am super excited to share my most recent results that I got back today. I decided after finding out that I can't get in to see my oncologist for another two weeks to at least try and get my brain MRI results. My gamma nurse called me back this morning to let me know that it came back stable! So happy to hear this news since I have been stressed and worried for the last several weeks about what was going on up there. I think that having this whole issue with my lungs again has just re-inforced that it can and will pop up anywhere at anytime. My medical staff seem to be happily surprised whenever my MRI results come back stable so this is great but it also tells me that this isn't the norm and I worry about how long it will remain this way. Not long after I returned to work I started having some headaches again. I tried to ignore it and put it down to being tired and just having to get used to working full time again. Of course, in the back of my mind I was wondering if the stress of returning to work and being busy again would cause my body to cave and relapse again. So happy to know that this is not the case and maybe I am tougher than I thought. I have to find some sort of trust in my body again that it will do what it needs to in order to keep those nasty cells from multiplying again and turning into a tumour.
It is definitely hard to wait for results ESPECIALLY WHEN YOU KNOW THAT THEY ARE SITTING IN YOUR CHART. It makes me feel that the system is failing me and that they are not as on top of things as I had hoped. I know that my pathology is going to come back as metastatic melanoma (apparently they could tell since it was black) but I have several questions about it like: how big? any lymph nodes affected? what now? I am very anxious to get in to see my doctor to have these and many more questions answered. I decided to reach out and get some information on my own and find out more about treatment options. I had a great conversation with a lady from Ontario this morning who is super involved in the melanoma world and has many connections and lots of information about things like treatment. It was very informative and now I have even more to speak to my doctor about. I did find out that the treatment that I have received so far is not offered anywhere else in Canada in my situation. This may be a good thing or it may not. I would hope that I am getting the top of the line treatments offered to me. If there is something better, then of course I want it.
My last blog I talked about my difficulties in the hospital with my last surgery. I have since found out that I was ticked off with the anesthesia people when it was actually the surgical resident that was the problem. I wouldn't have really known who he was since he never did introduce himself. I had a lengthy conversation with the patient advocate representative from the hospital and had all of my concerns heard. Sounds like a case of an arrogant surgeon (go figure). I've decided to put this behind me and just be thankful that the surgery was successful. I'm sure this won't be the last time I run into a health care professional that "doesn't get it".
So I started typing this blog the other day and am picking off where I left off with the newest information that I received today. After getting tired of waiting for my oncologist to give me my pathology back I decided to make an appointment with my GP and get them from her which is what I did today. I am not always the most patient of patients. It seems that I was the only one not in the loop and not knowing what was going on. The news was good in that it did come back as metastatic melanoma with clear margins and no involvment of lymph nodes. In fact, they didn't mention anything about lymph nodes on the pathology report so I have no idea what my surgeon was seeing in there. So that is that! Unfortunately, there is no chemotherapy or radiation that they can offer me so that is the end of my treatment for now. I will be seeing him next week so then I can discuss a plan with him. The treatment options are changing frequently with melanoma as they are learning more and more about it and trying different ways to treat it all the time especially recently. Hopefully they will come up with something soon. I've heard of several new therapies which are in clinical trials right now. Right now I am feeling great! Very relieved and happy to be back to my No Evidence of Disease status!!
It's too bad that we just can't seem to stay away from the hospital though. My Mom fell the other day and broke her arm so she has been in the hospital ever since waiting to get in for surgery. We are really hoping and praying that they get her in today. She is on the waiting list right now so whenever one of them has time she will get in. They are controlling her pain well and she has a sweet nurse who is taking really good care of her. Nurses make all the difference in the world! Thank you to all of the wonderful, caring and compassionate nurses out there who do such an amazing job and don't get the recoginition they so deserve.
So, hopefully things calm down around here so that we can have a nice, peaceful Christmas. Hope everyone is enjoying the holidays so far and taking time to enjoy the small things.
It is definitely hard to wait for results ESPECIALLY WHEN YOU KNOW THAT THEY ARE SITTING IN YOUR CHART. It makes me feel that the system is failing me and that they are not as on top of things as I had hoped. I know that my pathology is going to come back as metastatic melanoma (apparently they could tell since it was black) but I have several questions about it like: how big? any lymph nodes affected? what now? I am very anxious to get in to see my doctor to have these and many more questions answered. I decided to reach out and get some information on my own and find out more about treatment options. I had a great conversation with a lady from Ontario this morning who is super involved in the melanoma world and has many connections and lots of information about things like treatment. It was very informative and now I have even more to speak to my doctor about. I did find out that the treatment that I have received so far is not offered anywhere else in Canada in my situation. This may be a good thing or it may not. I would hope that I am getting the top of the line treatments offered to me. If there is something better, then of course I want it.
My last blog I talked about my difficulties in the hospital with my last surgery. I have since found out that I was ticked off with the anesthesia people when it was actually the surgical resident that was the problem. I wouldn't have really known who he was since he never did introduce himself. I had a lengthy conversation with the patient advocate representative from the hospital and had all of my concerns heard. Sounds like a case of an arrogant surgeon (go figure). I've decided to put this behind me and just be thankful that the surgery was successful. I'm sure this won't be the last time I run into a health care professional that "doesn't get it".
So I started typing this blog the other day and am picking off where I left off with the newest information that I received today. After getting tired of waiting for my oncologist to give me my pathology back I decided to make an appointment with my GP and get them from her which is what I did today. I am not always the most patient of patients. It seems that I was the only one not in the loop and not knowing what was going on. The news was good in that it did come back as metastatic melanoma with clear margins and no involvment of lymph nodes. In fact, they didn't mention anything about lymph nodes on the pathology report so I have no idea what my surgeon was seeing in there. So that is that! Unfortunately, there is no chemotherapy or radiation that they can offer me so that is the end of my treatment for now. I will be seeing him next week so then I can discuss a plan with him. The treatment options are changing frequently with melanoma as they are learning more and more about it and trying different ways to treat it all the time especially recently. Hopefully they will come up with something soon. I've heard of several new therapies which are in clinical trials right now. Right now I am feeling great! Very relieved and happy to be back to my No Evidence of Disease status!!
It's too bad that we just can't seem to stay away from the hospital though. My Mom fell the other day and broke her arm so she has been in the hospital ever since waiting to get in for surgery. We are really hoping and praying that they get her in today. She is on the waiting list right now so whenever one of them has time she will get in. They are controlling her pain well and she has a sweet nurse who is taking really good care of her. Nurses make all the difference in the world! Thank you to all of the wonderful, caring and compassionate nurses out there who do such an amazing job and don't get the recoginition they so deserve.
So, hopefully things calm down around here so that we can have a nice, peaceful Christmas. Hope everyone is enjoying the holidays so far and taking time to enjoy the small things.
Thursday, November 17, 2011
The Stubborn Pirate
As most of you know, I went in for surgery last Tuesday after returning home from the Conference and now that I've had some time to let everything sink in I thought that I would write about it. I warn you in advance that this is a long one and you may need to get a cup of coffee/tea/hot chocolate before you sit down in front of the computer to read this. Get yourself comfy... Here goes..... I was admitted into the hospital at 11:00 Tuesday morning which was so nice - not too early. My surgery was scheduled for 1:00 so I had lots of time to get into my gown, get my IV put in and get ready for the OR. Jeff and my mom sat and visited with me during this time. Jeff had me cracking up like he usually does under a fairly stressful situation. This is how we deal with things like this. I talk about how fortunate I feel and how lucky I am to be able to be having surgery. And Jeff laughs saying "Oh yeah. You are just so lucky! If only everyone could be as lucky as you." It's all in the way you look at things. Really, I might not even be here right now so it does make me feel grateful and lucky to get any treatment that will save or extend my life. Before we knew it at around 1:00 they were ready for me.
This time things went a little differently. They had me walk down with Jeff and my mom where the hallway splits off - in one direction to the waiting room where Jeff and my mom have been many times before and in the other direction - the operating rooms. We parted there with hugs and Jeff whispered in my ear "Everything is going to be alright". It's always so hard to part ways at this point and not being in a wheelchair was so weird. "K, see you guys later! Bye!" as I walk away. So then I end up in another waiting room where I will wait for my turn to go into the OR.
I get situated comfortably at the end of a long row of recliners. After being offered warm blankets and a pillow I can relax as they ask me all of their questions. "Do you know why you're here? What procedure are you having done? Which side are we operating on?" My nurse was great. He was very friendly, compassionate and spoke to me like a person. I had two concerns which I discussed with him. The first was whether to have an epidural or not. I was not offered an epidural the last time I had this surgery because of their concerns with my brain metastasis/swelling at the time (last year). This time they were offering me an epidural and so I had some questions about it. What if it did cause problems for me? I didn't have an epidural last time and pain control was good. I had an amazing anesthesist last time and he made sure that I felt nothing and had good pain control post op. My nurse thought that my concerns were valid and that I should speak to the anesthesist about it and he strongly encouraged me to make up my own mind and advocate for myself. The second thing was having the arterial line placed after I had been put to sleep instead of before. I've had both and just let it be known that if I had a choice I would prefer it be put in after I was asleep. He agreed and didn't blame me at all for wanting this.
After speaking to the resident anesthesist about it she gave me three choices: have an epidural before surgery, wait and if needed get one after the surgery if my pain is not being controlled or not have one at all. After further discussion I chose option 2 - wait and if needed have an epidural after surgery if I can't handle the pain. Great! She thought that this was reasonable and we were all on the same page. My wonderful nurse also spoke out for me and I got my arterial line placed after I was asleep. Thank you to this amazing nurse for advocating for me and for listening to me. I saw another familiar face in the room - the nurse who had looked after me for the previous two surgeries. She actually remembered me and we had a quick little chat. It felt good to see someone familiar in there. After a quick discussion with my surgeon I am off and walking down the hallway to OR #5.
So I enter the room and hop up on the table while being introduced to a room full of people in gowns and masks. I'm being attached to multiple electrodes which I'm told will monitor me during the surgery. The mask is placed over my face and the anesthesist asks me what I would like to dream of. This is the first time seeing this guy (he didn't come to speak to me with the resident) so as I'm thinking about it he says puppies or kittens? Neither. I'm thinking more along the lines of maybe my kids or even Jon Bon Jovi. So we settle on a hot beach somewhere and before I know it I'm asleep.
I'm starting to wake up and I can hear people talking. The anesthesist is up by my head and he's talking about me - saying how stubborn I am. Really? Why is that? I can feel myself getting mad. Then he tells me to cough and as I do I feel a long tube being pulled from my throat. Now, I must admit that it probably is quite comical hearing someone coughing up a tube like this that has been in their throat for hours but he says to everyone "She sounds like a pirate! Argh! Argh!" After alot of laughter I fall back asleep. I wake up again lying in the recovery room. Pain is burning through my chest so much so that I can barely talk. The nurse asks where my pain is and I think I just tell her it hurts alot. I feel like I can't move, talk or breathe. Everything hurts. The anesthesist comes over and asks about my pain. I tell him it hurts alot. His response is "If you had let me give you an epidural you wouldn't be having this pain." OK, I'm thinking but we decided not to do the epidural so now what? I can't verbalize what I'm thinking because I'm in too much pain. I'm falling in and out of sleep but when I'm awake I am full of pain and can't do anything about it. The nurse finally comes with a pain pump and hooks me up and I start to feel better immediately. They wheel me down to the floor where I will be staying.
My family comes in after they get me settled. I'm in a room with three other people and it is super crowded. My family seems upset. Apparently, they have been waiting in the surgical waiting room for hours (during my surgery and the whole time I was in the recovery room) and no one let them know that I was even out of surgery. So they are starting to get worried and when my mom phones over to recovery they let her know that I've already been sent to the ward. They were starting to think that maybe something had gone wrong during the surgery; meanwhile, I was out of surgery early. Anyway, we are getting settled and I am basically in and out for the next several hours. My blood pressure is quite low and they are monitoring me closely putting me in the bed directly across from the nursing desk. Apparently they had trouble with my blood pressure the whole time keeping a close watch on it. My family all left to let my get some rest and my night nurse is the same nurse I had last time. Super nice woman and we would spend the next several hours through the night trying to get me to pee. Yes, pee. This is a big deal after surgery. Your bladder is filling itself up, overflowing, yet you can't feel it because you are numb from all the drugs. So you either have to pee eventually or they catheterize you. Now, if you had the choice. What would you choose? I wanted to pee on my own so badly but it just wouldn't happen - no matter what. After an ultrasound of my bladder showing that I had twice the amount of fluid in there than I shouldI had to give up and go for the catheter. Finally after this I could sleep in between waking up to give myself more morpine through the pain pump.
The next mornning were rounds and I can't exactly remember in which order I saw and spoke to everyone but seeing the anesthesist is clear in my mind. He is complaining about being woken up at 2 am to order a catheter for me. He's not happy about being disturbed. This doesn't even make sense to me. Why would he have to order this and wouldn't they anticipate this happening since I'm sure it's very common for people to have trouple peeing after a big surgery like this? Asks me about my pain. It's much better now but not perfect. He reminds me once again that if I had not refused an epidural I would have been better off. What? I am finally able to tell him that it wasn't just that I didn't want an epidural. I am so confused at this point. Does he just think that I am afraid of needles? Does he know everything that I have been through? He really does just think that I am being sucky and not wanting a needle in my back. Seriously?! He finally decides to ask me the question, "Why is it that you didn't want an epidural, then?" I tell him a bit about my history and how they had told me how dangerous it could be for someone with either brain metastasis or swelling to start playing around with the central nervous system. How it could cause major problems for me. I havn't had a brain MRI for three months. I don't know what's going on up there. I just didn't want to chance it especially since I had such good pain control during the previous surgery. I had no problems. He just looked at me with a blank look on his face and left. That was it. Did he not read my chart? He had no idea about my history? This is the one and only time I have run in to someone like this during the last two years of being in the health care system. He was not compassionate, didn't listen and didn't seem to care about anything but himself. All I can say is what a jerk and he will NEVER be coming near me again. My pain control was not handled properly and I feel like he wasn't concerned with making my pain manageable because he wanted me to be sorry that I didn't choose an epidural. That is not right! I shouldn't remember what went on when I was being extubated and I wouldn't if I had been drugged appropriately. My last surgery I don't remember what happened most of the first day because they wanted to make sure that I was kept comfortable. What a different experience this was. Glad I will never have to deal with this guy again!
I then have a woman (wasn't sure exactly who she was) come in and again talk to me about pain. By this point I had been using the pain pump and was doing fine with it. She was here to give me an epidural just in case I was having too much pain. No, I'm good. Thanks though. What's with the epidural push? When I was there having my baby I begged for an epidural and never did end up getting one and now they are pushing it on me. Anyway, I think that it was just ordered by the resident I had spoken too as we had planned just in case the pain pump wasn't working enough. So that was all good.
Another visitor that morning was my surgeon and his assistant. Of couse I ask how things went and am told that if you wake up in recovery and get sent down to the ward that means that things went well. OK. I was hoping for more specifics. Obviously, I'm happy that I woke up. That's always a good sign. So surgery went well. The surgeon then tells me that what he did remove from my lung was black and that there were also some dark lymph nodes there that he removed as well. I'm still not exactly sure what this means and we won't have any more information than this until the pathology comes back. I don't like the sounds of it. We thought that it was a little 6x8 mm nodule - that's it. So he then lets me know that I can leave. OK. I havn't been up out of bed yet, I havn't peed on my own yet, my pain is still not completely under control and I'm hooked up to a pain pump, it hasn't even been 24hours since my lung surgery and I can go? Really? Yep, no problem. I just have to have the tube hanging out of my chest removed and my IV out and off I go. Wow! Just like that. So I'm very cautiously optomistic that this is really possible. A few hours earlier I heard the woman in the next bed talking to the woman across from her. "Watch this young one next to us. She'll be in and out of here in no time". She sounded very perturbed by this and I can't blame her. She had been there for 3 weeks at the time dealing with complications from her surgery. Just so that people know though. Curtains are not sound proof. People can hear what you are saying on the other side of that curtain. Like Hello!!! It's fabric!
So I'm thinking that there is no way that I am ready to go home today. I would love to because it is not fun having three other room mates and listening to all the noises of the hospital. And come on hospital food really is disgusting! So I'm lying there thinking about all this and then someone comes in with some things for me to "bath myself" with. Special wipes because there has been an outbreak of VRE on the ward. What? Come on. The nurse explains that there is some kind of bug outbreak which at first I think he's talking about bed bugs and I freak out. No it's some kind of superbug that is resisent against antibiotics. Great! Now I really do want to get out of here. I get my first visitor of the day, Linda. I'm a little overwhelmed with everthing that has gone on this morning already. People coming in and out. I'm trying to bath myself with the wipes to make sure I don't get some kind of weird bug and my curtain keeps getting pulled open but the woman next to me. I just kept thinking "Please get me the hell out of here". A breathe of fresh air - Linda. We just start visiting and then x-ray is here to take me down for a chest x-ray and physio is here to take me for a walk. Linda is great and helps me manoever around all the mess in the hallway and get me to where I need to be. My x-ray turns out and then they are here to pull my tube out.
I'm up walking around so they disconnect the pain pump and give me some T#3's. Christine and my mom are here and shocked that they are talking about letting me go home. After hearing about the bug outbreak (there's signs up all over the ward) and hearing all the commotion going on we all decide that it's best if I go home. I do some laps in the hallway and have a pee on my own. Yayyy!!! I didn't get a smartie but I did hear myself say "Oh yeah!" and give a little fist pump. The T#3's seem to be managing the pain. Good enough. Let's go! I pack up all my stuff which I didn't even have time to unpack and get my IV out. After getting my discharge instructions I am so out of there. I had actually went into the hospital thinking that I would stay for at least a couple of days so to be on my way home by around 2:00 that afternoon was a surprise to say the least. The kids were so excited to see me after school! We had an awesome night together and boy was it ever so good to be home!!!
This last week I have been resting lots. My pain is getting less and less every day and I am starting to feel more like myself. I have gotten out of the house every day going for little walks or getting the kids to their appointments. I have been sleeping better and better every night and feel like things are going really well. It's a little over a weeks since surgery and I think that I am doing pretty well. Tomorrow, I go back to the surgeon and have my stitches and my staples removed. My insicion is alot longer this time than the last and my pain seems to be worse so I think that it will take me just a little bit longer this time to be back to my old self. Everyone has been wonderful helping get the kids to hockey, coming and making us meals and cleaning up. Thank you so much for this. It really means alot to us to have so much support.
Kaden comes into my room the other day and says, "So Mommy, you don't have cancer anymore right?" I was slow with my response and he continues, "You had surgery so now it's all gone?" "Yes, you are right." I finally respond. Half not believing what I am saying but not sure what else to say. Then I hear him go into the living room and announce to the boys and their friends that his mom doesn't have cancer anymore because she had surgery and they took it all out. God, I hope that he is right...
I am grateful for an amazing husband who makes me laugh when I need it the most and lets me cry when I can't laugh anymore. My kids amaze me everyday with the way they handle life and have grown up so much in the past couple of years. They are growing up into the little men that I always dreamed they would become. We have family right there helping us get through this and taking care of me. The love I feel is so overwhelming! I know that even those who don't live close keep us close to their hearts and this means so much to us. There are alot of people out there praying for us and cheering us on and this is what keeps our spirits up and keeps us strong. Thank you....
This time things went a little differently. They had me walk down with Jeff and my mom where the hallway splits off - in one direction to the waiting room where Jeff and my mom have been many times before and in the other direction - the operating rooms. We parted there with hugs and Jeff whispered in my ear "Everything is going to be alright". It's always so hard to part ways at this point and not being in a wheelchair was so weird. "K, see you guys later! Bye!" as I walk away. So then I end up in another waiting room where I will wait for my turn to go into the OR.
I get situated comfortably at the end of a long row of recliners. After being offered warm blankets and a pillow I can relax as they ask me all of their questions. "Do you know why you're here? What procedure are you having done? Which side are we operating on?" My nurse was great. He was very friendly, compassionate and spoke to me like a person. I had two concerns which I discussed with him. The first was whether to have an epidural or not. I was not offered an epidural the last time I had this surgery because of their concerns with my brain metastasis/swelling at the time (last year). This time they were offering me an epidural and so I had some questions about it. What if it did cause problems for me? I didn't have an epidural last time and pain control was good. I had an amazing anesthesist last time and he made sure that I felt nothing and had good pain control post op. My nurse thought that my concerns were valid and that I should speak to the anesthesist about it and he strongly encouraged me to make up my own mind and advocate for myself. The second thing was having the arterial line placed after I had been put to sleep instead of before. I've had both and just let it be known that if I had a choice I would prefer it be put in after I was asleep. He agreed and didn't blame me at all for wanting this.
After speaking to the resident anesthesist about it she gave me three choices: have an epidural before surgery, wait and if needed get one after the surgery if my pain is not being controlled or not have one at all. After further discussion I chose option 2 - wait and if needed have an epidural after surgery if I can't handle the pain. Great! She thought that this was reasonable and we were all on the same page. My wonderful nurse also spoke out for me and I got my arterial line placed after I was asleep. Thank you to this amazing nurse for advocating for me and for listening to me. I saw another familiar face in the room - the nurse who had looked after me for the previous two surgeries. She actually remembered me and we had a quick little chat. It felt good to see someone familiar in there. After a quick discussion with my surgeon I am off and walking down the hallway to OR #5.
So I enter the room and hop up on the table while being introduced to a room full of people in gowns and masks. I'm being attached to multiple electrodes which I'm told will monitor me during the surgery. The mask is placed over my face and the anesthesist asks me what I would like to dream of. This is the first time seeing this guy (he didn't come to speak to me with the resident) so as I'm thinking about it he says puppies or kittens? Neither. I'm thinking more along the lines of maybe my kids or even Jon Bon Jovi. So we settle on a hot beach somewhere and before I know it I'm asleep.
I'm starting to wake up and I can hear people talking. The anesthesist is up by my head and he's talking about me - saying how stubborn I am. Really? Why is that? I can feel myself getting mad. Then he tells me to cough and as I do I feel a long tube being pulled from my throat. Now, I must admit that it probably is quite comical hearing someone coughing up a tube like this that has been in their throat for hours but he says to everyone "She sounds like a pirate! Argh! Argh!" After alot of laughter I fall back asleep. I wake up again lying in the recovery room. Pain is burning through my chest so much so that I can barely talk. The nurse asks where my pain is and I think I just tell her it hurts alot. I feel like I can't move, talk or breathe. Everything hurts. The anesthesist comes over and asks about my pain. I tell him it hurts alot. His response is "If you had let me give you an epidural you wouldn't be having this pain." OK, I'm thinking but we decided not to do the epidural so now what? I can't verbalize what I'm thinking because I'm in too much pain. I'm falling in and out of sleep but when I'm awake I am full of pain and can't do anything about it. The nurse finally comes with a pain pump and hooks me up and I start to feel better immediately. They wheel me down to the floor where I will be staying.
My family comes in after they get me settled. I'm in a room with three other people and it is super crowded. My family seems upset. Apparently, they have been waiting in the surgical waiting room for hours (during my surgery and the whole time I was in the recovery room) and no one let them know that I was even out of surgery. So they are starting to get worried and when my mom phones over to recovery they let her know that I've already been sent to the ward. They were starting to think that maybe something had gone wrong during the surgery; meanwhile, I was out of surgery early. Anyway, we are getting settled and I am basically in and out for the next several hours. My blood pressure is quite low and they are monitoring me closely putting me in the bed directly across from the nursing desk. Apparently they had trouble with my blood pressure the whole time keeping a close watch on it. My family all left to let my get some rest and my night nurse is the same nurse I had last time. Super nice woman and we would spend the next several hours through the night trying to get me to pee. Yes, pee. This is a big deal after surgery. Your bladder is filling itself up, overflowing, yet you can't feel it because you are numb from all the drugs. So you either have to pee eventually or they catheterize you. Now, if you had the choice. What would you choose? I wanted to pee on my own so badly but it just wouldn't happen - no matter what. After an ultrasound of my bladder showing that I had twice the amount of fluid in there than I shouldI had to give up and go for the catheter. Finally after this I could sleep in between waking up to give myself more morpine through the pain pump.
The next mornning were rounds and I can't exactly remember in which order I saw and spoke to everyone but seeing the anesthesist is clear in my mind. He is complaining about being woken up at 2 am to order a catheter for me. He's not happy about being disturbed. This doesn't even make sense to me. Why would he have to order this and wouldn't they anticipate this happening since I'm sure it's very common for people to have trouple peeing after a big surgery like this? Asks me about my pain. It's much better now but not perfect. He reminds me once again that if I had not refused an epidural I would have been better off. What? I am finally able to tell him that it wasn't just that I didn't want an epidural. I am so confused at this point. Does he just think that I am afraid of needles? Does he know everything that I have been through? He really does just think that I am being sucky and not wanting a needle in my back. Seriously?! He finally decides to ask me the question, "Why is it that you didn't want an epidural, then?" I tell him a bit about my history and how they had told me how dangerous it could be for someone with either brain metastasis or swelling to start playing around with the central nervous system. How it could cause major problems for me. I havn't had a brain MRI for three months. I don't know what's going on up there. I just didn't want to chance it especially since I had such good pain control during the previous surgery. I had no problems. He just looked at me with a blank look on his face and left. That was it. Did he not read my chart? He had no idea about my history? This is the one and only time I have run in to someone like this during the last two years of being in the health care system. He was not compassionate, didn't listen and didn't seem to care about anything but himself. All I can say is what a jerk and he will NEVER be coming near me again. My pain control was not handled properly and I feel like he wasn't concerned with making my pain manageable because he wanted me to be sorry that I didn't choose an epidural. That is not right! I shouldn't remember what went on when I was being extubated and I wouldn't if I had been drugged appropriately. My last surgery I don't remember what happened most of the first day because they wanted to make sure that I was kept comfortable. What a different experience this was. Glad I will never have to deal with this guy again!
I then have a woman (wasn't sure exactly who she was) come in and again talk to me about pain. By this point I had been using the pain pump and was doing fine with it. She was here to give me an epidural just in case I was having too much pain. No, I'm good. Thanks though. What's with the epidural push? When I was there having my baby I begged for an epidural and never did end up getting one and now they are pushing it on me. Anyway, I think that it was just ordered by the resident I had spoken too as we had planned just in case the pain pump wasn't working enough. So that was all good.
Another visitor that morning was my surgeon and his assistant. Of couse I ask how things went and am told that if you wake up in recovery and get sent down to the ward that means that things went well. OK. I was hoping for more specifics. Obviously, I'm happy that I woke up. That's always a good sign. So surgery went well. The surgeon then tells me that what he did remove from my lung was black and that there were also some dark lymph nodes there that he removed as well. I'm still not exactly sure what this means and we won't have any more information than this until the pathology comes back. I don't like the sounds of it. We thought that it was a little 6x8 mm nodule - that's it. So he then lets me know that I can leave. OK. I havn't been up out of bed yet, I havn't peed on my own yet, my pain is still not completely under control and I'm hooked up to a pain pump, it hasn't even been 24hours since my lung surgery and I can go? Really? Yep, no problem. I just have to have the tube hanging out of my chest removed and my IV out and off I go. Wow! Just like that. So I'm very cautiously optomistic that this is really possible. A few hours earlier I heard the woman in the next bed talking to the woman across from her. "Watch this young one next to us. She'll be in and out of here in no time". She sounded very perturbed by this and I can't blame her. She had been there for 3 weeks at the time dealing with complications from her surgery. Just so that people know though. Curtains are not sound proof. People can hear what you are saying on the other side of that curtain. Like Hello!!! It's fabric!
So I'm thinking that there is no way that I am ready to go home today. I would love to because it is not fun having three other room mates and listening to all the noises of the hospital. And come on hospital food really is disgusting! So I'm lying there thinking about all this and then someone comes in with some things for me to "bath myself" with. Special wipes because there has been an outbreak of VRE on the ward. What? Come on. The nurse explains that there is some kind of bug outbreak which at first I think he's talking about bed bugs and I freak out. No it's some kind of superbug that is resisent against antibiotics. Great! Now I really do want to get out of here. I get my first visitor of the day, Linda. I'm a little overwhelmed with everthing that has gone on this morning already. People coming in and out. I'm trying to bath myself with the wipes to make sure I don't get some kind of weird bug and my curtain keeps getting pulled open but the woman next to me. I just kept thinking "Please get me the hell out of here". A breathe of fresh air - Linda. We just start visiting and then x-ray is here to take me down for a chest x-ray and physio is here to take me for a walk. Linda is great and helps me manoever around all the mess in the hallway and get me to where I need to be. My x-ray turns out and then they are here to pull my tube out.
I'm up walking around so they disconnect the pain pump and give me some T#3's. Christine and my mom are here and shocked that they are talking about letting me go home. After hearing about the bug outbreak (there's signs up all over the ward) and hearing all the commotion going on we all decide that it's best if I go home. I do some laps in the hallway and have a pee on my own. Yayyy!!! I didn't get a smartie but I did hear myself say "Oh yeah!" and give a little fist pump. The T#3's seem to be managing the pain. Good enough. Let's go! I pack up all my stuff which I didn't even have time to unpack and get my IV out. After getting my discharge instructions I am so out of there. I had actually went into the hospital thinking that I would stay for at least a couple of days so to be on my way home by around 2:00 that afternoon was a surprise to say the least. The kids were so excited to see me after school! We had an awesome night together and boy was it ever so good to be home!!!
This last week I have been resting lots. My pain is getting less and less every day and I am starting to feel more like myself. I have gotten out of the house every day going for little walks or getting the kids to their appointments. I have been sleeping better and better every night and feel like things are going really well. It's a little over a weeks since surgery and I think that I am doing pretty well. Tomorrow, I go back to the surgeon and have my stitches and my staples removed. My insicion is alot longer this time than the last and my pain seems to be worse so I think that it will take me just a little bit longer this time to be back to my old self. Everyone has been wonderful helping get the kids to hockey, coming and making us meals and cleaning up. Thank you so much for this. It really means alot to us to have so much support.
Kaden comes into my room the other day and says, "So Mommy, you don't have cancer anymore right?" I was slow with my response and he continues, "You had surgery so now it's all gone?" "Yes, you are right." I finally respond. Half not believing what I am saying but not sure what else to say. Then I hear him go into the living room and announce to the boys and their friends that his mom doesn't have cancer anymore because she had surgery and they took it all out. God, I hope that he is right...
I am grateful for an amazing husband who makes me laugh when I need it the most and lets me cry when I can't laugh anymore. My kids amaze me everyday with the way they handle life and have grown up so much in the past couple of years. They are growing up into the little men that I always dreamed they would become. We have family right there helping us get through this and taking care of me. The love I feel is so overwhelming! I know that even those who don't live close keep us close to their hearts and this means so much to us. There are alot of people out there praying for us and cheering us on and this is what keeps our spirits up and keeps us strong. Thank you....
Wednesday, November 16, 2011
Saturday, November 12, 2011
Ottawa Conference 2011
So the last couple of weeks have really flown by. We celebrated Kaden's 7th birthday with a day full of fun. He had a birthday party with lots of his friends all dressed up in costumes, playing games and eating lots of treats. He had a great time. Then we had the family over for supper and cake. It was a very full and very fun day!! I also finished up work and have been off for the past two weeks. I did feel very sad closing my office door at the end of the day and saying goodbye to everyone there. Everyone has been so great with my return to work I felt like it was way too soon for me to be leaving again.
I was so happy to have the conference to look forward to so that I wasn't dwelling on the rest. We had an absolutely amazing time in Ottawa! My sisters and I were all able to attend the Young Adult Cancer Canada conference this time - Christine as a facilitator, Me as a Survivor and Laura as my Supporter. This was Laura's first experience with YACC and it was a very special one for sure. Laura and I spent our first day walking around Ottawa in the rain (with umbrellas of course) and it was absolutely beautiful. We stopped in at the Art Gallery and spent a few hours in this calm, peaceful place taking it all in. Besides getting to spend this time with my sisters, I so needed to reconnect with some of my cancer buddies. It's such a different world with us in a room together. Nothing like cutting right to the chase. People are so open and ready to share that there is no small talk. What kind of cancer do you have? What has your treatment been like and by the end of the conversation you are talking about relationships, fears, futures, bowel habits... It is pretty amazing how open cancer makes people. I love getting to know people at this level. It is so real.
I took away alot from this conference: a feeling of community, hope, strength, faith, knowledge and motivation. I was again reminded that 1% is not 0%. Anything is possible and no one knows what the future holds. I also realized how much guilt and blame that I was carrying with my cancer diagnosis. Apparently, there is nothing that I could have done in my short 36 years on this earth that could have caused myself to get cancer. The first time I heard this I said it over and over again in my head and thought that for sure he must be wrong but then when I really thought about it I realized that maybe it was true. I didn't even realize that I blamed myself for this happening. The questions that I get asked from my health care providers like; Do you spend alot of time in the sun? Have you used a tanning bed? Do you wear sunscreen? Then when my cancer spread to my lungs the question always asked; Do you smoke or have you ever smoked? All of these questions made a huge impact on me and implied to me that they thought that there was obviously something that I had done to cause this disease to pick on me. The realization that there really was nothing horrible that I had done to cause this to happen felt like a huge burden lifted from me. It is NOT my fault. Wow! I am also very motivated once again to help make my quality of life the best that it can be by taking great care of myself and my body.
The highlights for me from the conference were hearing Geoff's story. It was so inspiring but also full of humour and lots of lessons to be learned. Our speakers were full of knowledge about brain fog, exercise and yoga. I spent some time with some really amazing people who taught me so much about living life and inspired me to live and be well. Reconnecting with people I either have never met before or hadn't seen in a year or more was awesome! Hearing the stories and how people cope with their cancer and find healing. (Even if the healing does not always come physically) Hearing that my cancer had returned again this time was heartbreaking. I have found it very difficult to wrap my head around. And hearing out loud that my cancer will most likely keep coming back again and again was not easy. I realized being away at this conference that this was all so hard to hear that I wasn't really feeling it. I had become numb, not able to feel what all of this meant to me. The problem with this is that you can not feel any of the wonderful, amazing feelings either. Being at this conference really awakened all of my feeling (both good and bad) and let me finally let go of some of the crap. I feel so much more whole now and alive.
I missed Jeff and the kids like crazy while I was gone but I really think that it did me a lot of good to give myself this time away. As the weekend came to a close I couldn't help but start thinking about surgery coming up and starting to dread this but I focused more on getting back home and seeing Jeff and the boys. They are what keep me going and motivate me to live my best. I would do anything for my family. I love them so much.. I just wish that I could make all this cancer crap disappear and all of the pain and sadness that comes along with it.
Thank you YACC family for an amazing conference full of everything that I needed - energy, laughter, motivation, understanding, love and hope....
I was so happy to have the conference to look forward to so that I wasn't dwelling on the rest. We had an absolutely amazing time in Ottawa! My sisters and I were all able to attend the Young Adult Cancer Canada conference this time - Christine as a facilitator, Me as a Survivor and Laura as my Supporter. This was Laura's first experience with YACC and it was a very special one for sure. Laura and I spent our first day walking around Ottawa in the rain (with umbrellas of course) and it was absolutely beautiful. We stopped in at the Art Gallery and spent a few hours in this calm, peaceful place taking it all in. Besides getting to spend this time with my sisters, I so needed to reconnect with some of my cancer buddies. It's such a different world with us in a room together. Nothing like cutting right to the chase. People are so open and ready to share that there is no small talk. What kind of cancer do you have? What has your treatment been like and by the end of the conversation you are talking about relationships, fears, futures, bowel habits... It is pretty amazing how open cancer makes people. I love getting to know people at this level. It is so real.
I took away alot from this conference: a feeling of community, hope, strength, faith, knowledge and motivation. I was again reminded that 1% is not 0%. Anything is possible and no one knows what the future holds. I also realized how much guilt and blame that I was carrying with my cancer diagnosis. Apparently, there is nothing that I could have done in my short 36 years on this earth that could have caused myself to get cancer. The first time I heard this I said it over and over again in my head and thought that for sure he must be wrong but then when I really thought about it I realized that maybe it was true. I didn't even realize that I blamed myself for this happening. The questions that I get asked from my health care providers like; Do you spend alot of time in the sun? Have you used a tanning bed? Do you wear sunscreen? Then when my cancer spread to my lungs the question always asked; Do you smoke or have you ever smoked? All of these questions made a huge impact on me and implied to me that they thought that there was obviously something that I had done to cause this disease to pick on me. The realization that there really was nothing horrible that I had done to cause this to happen felt like a huge burden lifted from me. It is NOT my fault. Wow! I am also very motivated once again to help make my quality of life the best that it can be by taking great care of myself and my body.
The highlights for me from the conference were hearing Geoff's story. It was so inspiring but also full of humour and lots of lessons to be learned. Our speakers were full of knowledge about brain fog, exercise and yoga. I spent some time with some really amazing people who taught me so much about living life and inspired me to live and be well. Reconnecting with people I either have never met before or hadn't seen in a year or more was awesome! Hearing the stories and how people cope with their cancer and find healing. (Even if the healing does not always come physically) Hearing that my cancer had returned again this time was heartbreaking. I have found it very difficult to wrap my head around. And hearing out loud that my cancer will most likely keep coming back again and again was not easy. I realized being away at this conference that this was all so hard to hear that I wasn't really feeling it. I had become numb, not able to feel what all of this meant to me. The problem with this is that you can not feel any of the wonderful, amazing feelings either. Being at this conference really awakened all of my feeling (both good and bad) and let me finally let go of some of the crap. I feel so much more whole now and alive.
I missed Jeff and the kids like crazy while I was gone but I really think that it did me a lot of good to give myself this time away. As the weekend came to a close I couldn't help but start thinking about surgery coming up and starting to dread this but I focused more on getting back home and seeing Jeff and the boys. They are what keep me going and motivate me to live my best. I would do anything for my family. I love them so much.. I just wish that I could make all this cancer crap disappear and all of the pain and sadness that comes along with it.
Thank you YACC family for an amazing conference full of everything that I needed - energy, laughter, motivation, understanding, love and hope....
Tuesday, October 4, 2011
Tough times don't last... tough people do. -Earl Cook
So, alot has happened in the past few weeks and I have to admit it has been extremely difficult for my entire family. We said goodbye to my cousin Earl on September 18 (Jeff's birthday) and this has been very hard on everyone. As most of you know Earl has been fighting hard against his cancer for the past several years. He never gave up - ever! He always smiled and lived his life the way that he wanted, never missing an opportunity to have fun. Just a month before, we spent the day at Quarry Days watching the kids on the rides and eating mini-doughnuts, sipping lemonade even though I know he was exhausted and not feeling great. I will never again be able to watch Trailor Park Boys and not think of Earl's goofy laugh! He had such a big heart always thinking of others. At an appointment for his CT not long ago, as the woman across from us was choking down the contrast she had to drink two glasses of, Earl says to me "Natalie, I want to give her some of my iced tea powder". Earl brings some Crystal light or iced tea mix to stir into the contrast so that it doesn't taste so terrible. After I said sure, he offered it to her. She declined smiling but I thought it was so sweet that he didn't like seeing someone else uncomfortable and wanted to help make it easier for her. It's hard to believe that we will never see him again. The boys are very angry and sad but they can all picture Earl up in heaven playing in goal for his team. The question was asked,"Where was Earl's God the night he died." My answer to this to the boys was "Right there with Earl in his arms releasing him from his pain and suffering." And I truly do believe this. The service for Earl was held at the MTS centre and was exactly what Earl would have wanted - a service about the two things that Earl loved most in this world - God and hockey. It was very spiritual and beautiful. We will all miss him so much. Like Earl used to say all the time "Tough times don't last...tough people do." He was definitely tough. We love you Earl!
Unfortunately, Earl was supposed to receive the Ace Bailey Award of Courage a week later. He was so looking forward to this evening even making sure that his surgery and any chemotherapy treatments would be arranged around this special night. His mom (Debbie) accepted his award on his behalf in Toronto and I'm sure that he was looking down and loving every minute of it.
While all this was happening we were still waiting for me to get in for the PET scan which showed that there was only one "hot spot" in my right middle lobe. Good news!! We waited anxiously for the next week until I got in to see the Thoracic surgeon to see if he thought that this was operable. I saw him yesterday and found out that -Yes- he will do the surgery the beginning of November. Since this is most likely another melanoma tumour we don't want to wait to watch and see if it spreads. I made sure that he knew how much I wanted this thing gone ASAP. The PET scan showed that it seems to be growing very slowly so another 4 weeks should not affect things too much. So now it's time to get my body strong for another surgery so that I can bounce back as quickly as last time. I am still working finishing up my back to work program and start full time next week. I will work until just before my surgery date and then will be off again for somewhere between 6-8 weeks for recovery. My boss is being really great about this and hopefully I won't run into any problems along the way.
It's hard to believe that "It's back" and I am having to deal with this again already. They talk about this being my fourth recurrence which makes absolutely no sense to me. The lesion on my temple would be the first occurrence, then the brain and lung happened at the same time so that would be REcurrence #1 and now the lung again would be REcurrence #2. By my books this would only be my 2nd recurrence but whatever....
I know that this is not the ideal situation. Of course it's not good when you're cancer reuccurs any number of times but I still feel well and am willing to do whatever it takes to get back to my previous NED (no evidence of disease) status.
I am much more accepting of my living with cancer and now realize that it will be with me now on and off (hopefully mostly off) for the rest of my life. I am trying to find a more balanced approach to dealing with this instead of living on this up and down rollar coaster which I am quite frankly tired of riding. I was listening to my Jann Arden CD on the way to work the other day and her cover song Peace Train came on. Then it hit me - I just need to hop on to the Peace Train. "I've been happy lately, thinking about the good things to come. Up on the edge of darkness, there rides a peace train. Peace train sounding louder, ride on the peace train. Come on the peace train. It's not so far from you and it's getting nearer. Soon it will all be true! Everyone up on the peace train!" I can guarantee you that as soon as that peace train comes anywhere near me again I am hitching a ride!!
So how does a person get ready for a doctor's appointment with a surgeon who will decide ultimately if he will do surgery or not? As I was getting ready Monday morning for my appointment I thought alot about this. I was preparing myself mentally for either decision that he would make. I rehearsed my side of things and reasons why I wanted this surgery several times in my head just in case I had to debate my side of things. Also, getting ready I thought about how I needed to look - not too healthy but not too sick either. What if he looked at me and thought "She doesn't look strong enough to go through another surgery." or "She's looks pretty good. She'll be fine for a while. This isn't a big rush." I actually laughed out loud at myself in the mirror thinking that I was losing my mind. Who thinks about how healthy or how sick they should look for a doctor's appointment??
So, here we are getting ready for another surgery and remaining hopeful that this will be the last one that I will need because the cancer does not come back. The weekend before surgery I will be attending the Young Adult Cancer Canada conference and am amazed that it has once again worked out perfectly and I will get the chance to reconnect with my friends before coming back for surgery. Some things just fall into place and work out the way that they are meant to and this is one of them.
Thank you to all of you for keeping me and my family in your thoughts and prayers. It means alot to us. And so Earl and I go our seperate ways on this journey but both of us I know will find our own peace....
Love you buddy xoxoxo
Unfortunately, Earl was supposed to receive the Ace Bailey Award of Courage a week later. He was so looking forward to this evening even making sure that his surgery and any chemotherapy treatments would be arranged around this special night. His mom (Debbie) accepted his award on his behalf in Toronto and I'm sure that he was looking down and loving every minute of it.
While all this was happening we were still waiting for me to get in for the PET scan which showed that there was only one "hot spot" in my right middle lobe. Good news!! We waited anxiously for the next week until I got in to see the Thoracic surgeon to see if he thought that this was operable. I saw him yesterday and found out that -Yes- he will do the surgery the beginning of November. Since this is most likely another melanoma tumour we don't want to wait to watch and see if it spreads. I made sure that he knew how much I wanted this thing gone ASAP. The PET scan showed that it seems to be growing very slowly so another 4 weeks should not affect things too much. So now it's time to get my body strong for another surgery so that I can bounce back as quickly as last time. I am still working finishing up my back to work program and start full time next week. I will work until just before my surgery date and then will be off again for somewhere between 6-8 weeks for recovery. My boss is being really great about this and hopefully I won't run into any problems along the way.
It's hard to believe that "It's back" and I am having to deal with this again already. They talk about this being my fourth recurrence which makes absolutely no sense to me. The lesion on my temple would be the first occurrence, then the brain and lung happened at the same time so that would be REcurrence #1 and now the lung again would be REcurrence #2. By my books this would only be my 2nd recurrence but whatever....
I know that this is not the ideal situation. Of course it's not good when you're cancer reuccurs any number of times but I still feel well and am willing to do whatever it takes to get back to my previous NED (no evidence of disease) status.
I am much more accepting of my living with cancer and now realize that it will be with me now on and off (hopefully mostly off) for the rest of my life. I am trying to find a more balanced approach to dealing with this instead of living on this up and down rollar coaster which I am quite frankly tired of riding. I was listening to my Jann Arden CD on the way to work the other day and her cover song Peace Train came on. Then it hit me - I just need to hop on to the Peace Train. "I've been happy lately, thinking about the good things to come. Up on the edge of darkness, there rides a peace train. Peace train sounding louder, ride on the peace train. Come on the peace train. It's not so far from you and it's getting nearer. Soon it will all be true! Everyone up on the peace train!" I can guarantee you that as soon as that peace train comes anywhere near me again I am hitching a ride!!
So how does a person get ready for a doctor's appointment with a surgeon who will decide ultimately if he will do surgery or not? As I was getting ready Monday morning for my appointment I thought alot about this. I was preparing myself mentally for either decision that he would make. I rehearsed my side of things and reasons why I wanted this surgery several times in my head just in case I had to debate my side of things. Also, getting ready I thought about how I needed to look - not too healthy but not too sick either. What if he looked at me and thought "She doesn't look strong enough to go through another surgery." or "She's looks pretty good. She'll be fine for a while. This isn't a big rush." I actually laughed out loud at myself in the mirror thinking that I was losing my mind. Who thinks about how healthy or how sick they should look for a doctor's appointment??
So, here we are getting ready for another surgery and remaining hopeful that this will be the last one that I will need because the cancer does not come back. The weekend before surgery I will be attending the Young Adult Cancer Canada conference and am amazed that it has once again worked out perfectly and I will get the chance to reconnect with my friends before coming back for surgery. Some things just fall into place and work out the way that they are meant to and this is one of them.
Thank you to all of you for keeping me and my family in your thoughts and prayers. It means alot to us. And so Earl and I go our seperate ways on this journey but both of us I know will find our own peace....
Love you buddy xoxoxo
Friday, September 9, 2011
Stupid Cancer
How quickly things can change....
Last weekend Jeff & I took the boys to Minniapolis and had a really great time. We celebrated my birthday by going out for a nice dinner and the following day going to the waterpark. I started back to work the following day and had an awesome first day back. Got re-accquianted with everyone and got settled into my new office. I must say that on the drive there I felt so full of gratitude. I was so happy to be able to finally get back to work and be somewhat normal again. And the fact that I was returning to work meant that I was well and heatlhy again, right?? Alot of people dread going to work and I just felt like it was the best thing that could be happening. I must say that being back there was a little weird in a way because alot of things reminded me of when I was sick. I found a paper where I was keeping track of all my headaches and how I was feeling on a daily basis; trying to figure out what the headaches were from and how much Tylenol I was taking. Sort of brought everything that had happened back. Everyone there was so friendly and happy to see me back and well again.
Wednesday morning was my scheduled appointment with my Oncologist where I would be getting back all of my test results from the previous scans. I really am feeling great and wasn't expecting anything out of the ordinary. The resident came in and let us know that something was found on my chest scan - a tumour in the right middle lobe of my lung. It's a bit larger than the one I had removed last year and that one was in my right lower lobe. It is still quite small, 6 x 8 mm, but we need to jump on it ASAP. I am being sent for a PET scan in two weeks to see if there are any more hot spots which would mean that there is more than one tumour there. We are really hoping and praying that this is the only one and that they will be able to operate to remove it. If it is inoperable then I will be offered chemotherapy. I have to say that having a few really good friends in the waiting room was really nice. A few people that I have met through the Melanoma Support Group were waiting for their appointments so I got lots of hugs and comfort from them. It was really nice for both me and my mom.
So, we go from being excited and happy to being disappointed and worried over night. I am focusing right now on how I feel. I feel great! No chest pain, no shortness of breathe, no cough. I don't really understand how this can be and am anxious to find out more about what is going to happen. The really great news was that my brain MRI was stable - nothing new there popping up. This was a full body scan and this was the only spot that was found so I am grateful for that.
I do feel angry and disappointed that all of my planning and preparation has blown up in my face but I am still trying to figure out how to at least finish my back to work program before I have treatment. I feel a little betrayed by my body leading me to believe that I am gaining my health back and then snatching it back from me. Really though what can I do? We are all obviously very upset with this latest news but remain very hopeful that this will be easily treated. I remind myself that the tumour in my brain was much larger than this one and I got through that so this should be a walk in the park compared to that. Plus I've already had a chest surgery and it went very well.
I have registered and am so looking forward to attending another YACC conference which is in Ottawa in November. Hopefully things will fall into place and allow me to attend. Every event that I have been to through YACC has been amazing and very life changing. I honestly don't know what I would do without being a part of this and being able to connect with such wonderful people. If you or someone you know is a young adult (age 18 - 35ish) and dealing with a cancer dianosis this is an organization that you or they will want to connect with. Check out the website at www.youngadultcancer.ca and register for the conference. There is also a group of young adults which gets together at CancerCare in Winnipeg every month and they have been a huge support. I love going and catching up with everyone. They totally get it!
So, for the next two weeks I will just keep going and enjoying life while waiting to see what will happen. I actually scheduled a manicure/pedicure at the spa next week to finally use the gift certificate that's been sitting on my dresser for months and months.
Be well and live life to its fullest!!
Last weekend Jeff & I took the boys to Minniapolis and had a really great time. We celebrated my birthday by going out for a nice dinner and the following day going to the waterpark. I started back to work the following day and had an awesome first day back. Got re-accquianted with everyone and got settled into my new office. I must say that on the drive there I felt so full of gratitude. I was so happy to be able to finally get back to work and be somewhat normal again. And the fact that I was returning to work meant that I was well and heatlhy again, right?? Alot of people dread going to work and I just felt like it was the best thing that could be happening. I must say that being back there was a little weird in a way because alot of things reminded me of when I was sick. I found a paper where I was keeping track of all my headaches and how I was feeling on a daily basis; trying to figure out what the headaches were from and how much Tylenol I was taking. Sort of brought everything that had happened back. Everyone there was so friendly and happy to see me back and well again.
Wednesday morning was my scheduled appointment with my Oncologist where I would be getting back all of my test results from the previous scans. I really am feeling great and wasn't expecting anything out of the ordinary. The resident came in and let us know that something was found on my chest scan - a tumour in the right middle lobe of my lung. It's a bit larger than the one I had removed last year and that one was in my right lower lobe. It is still quite small, 6 x 8 mm, but we need to jump on it ASAP. I am being sent for a PET scan in two weeks to see if there are any more hot spots which would mean that there is more than one tumour there. We are really hoping and praying that this is the only one and that they will be able to operate to remove it. If it is inoperable then I will be offered chemotherapy. I have to say that having a few really good friends in the waiting room was really nice. A few people that I have met through the Melanoma Support Group were waiting for their appointments so I got lots of hugs and comfort from them. It was really nice for both me and my mom.
So, we go from being excited and happy to being disappointed and worried over night. I am focusing right now on how I feel. I feel great! No chest pain, no shortness of breathe, no cough. I don't really understand how this can be and am anxious to find out more about what is going to happen. The really great news was that my brain MRI was stable - nothing new there popping up. This was a full body scan and this was the only spot that was found so I am grateful for that.
I do feel angry and disappointed that all of my planning and preparation has blown up in my face but I am still trying to figure out how to at least finish my back to work program before I have treatment. I feel a little betrayed by my body leading me to believe that I am gaining my health back and then snatching it back from me. Really though what can I do? We are all obviously very upset with this latest news but remain very hopeful that this will be easily treated. I remind myself that the tumour in my brain was much larger than this one and I got through that so this should be a walk in the park compared to that. Plus I've already had a chest surgery and it went very well.
I have registered and am so looking forward to attending another YACC conference which is in Ottawa in November. Hopefully things will fall into place and allow me to attend. Every event that I have been to through YACC has been amazing and very life changing. I honestly don't know what I would do without being a part of this and being able to connect with such wonderful people. If you or someone you know is a young adult (age 18 - 35ish) and dealing with a cancer dianosis this is an organization that you or they will want to connect with. Check out the website at www.youngadultcancer.ca and register for the conference. There is also a group of young adults which gets together at CancerCare in Winnipeg every month and they have been a huge support. I love going and catching up with everyone. They totally get it!
So, for the next two weeks I will just keep going and enjoying life while waiting to see what will happen. I actually scheduled a manicure/pedicure at the spa next week to finally use the gift certificate that's been sitting on my dresser for months and months.
Be well and live life to its fullest!!
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